Rare Disorders NZ: October Update

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Oct 30, 2023, 10:13 PM

Greetings and kia ora koutou from Chief Executive Chris Higgins, writing from te toropaepae o te kōtuku, RDNZ’s new offices at 194 Riddiford Street, Newtown.

Following RDNZ’s Board meeting on 30th September I’m delighted to let everybody know that we now have an approved Strategic Plan for 2023 – 2026. This means that we head into the future with a clear vision of wanting the best possible health and wellbeing for people and whānau living with rare disorders in New Zealand/Aotearoa. We also have a refreshed mission to bring this about by championing and amplifying the collective voice of New Zealanders with rare disorders as we advocate for access to world class and world leading health, disability, education and other services. Our Strategic Plan and our Annual Plan, which sets out the specifics of what we’ll be addressing through to the end of June 2024, are available on our website here.

As mentioned below work on developing New Zealand’s first Rare Disorders Strategy (RDS) continues, with Manatū Hauora’s consultation with specialists and experts due to conclude next week, and Te Aka Whai Ora currently writing up the outcomes of their consultation with Māori and whānau who live with rare disorders. One of the many issues that has arisen is whether the use of the term rare “disorders” is unnecessarily deficit based, and whether we should explore more neutral or positive language in how we describe ourselves. This is reflected in the interim name of RDNZ’s new offices, and our sibling organisation in Australia simply calling itself “Rare Voices”. Comments and thoughts are very welcome.

The idea of a centre of expertise for rare and undiagnosed disorders continues to be central to RDNZ’s campaigning, both for the RDS and generally, and we’ll have more to say on this after we’ve considered the outcome of the consultation with Māori and whānau, and experts and specialists.

Ngā mihi,

Chris Higgins

Chief Executive

Rare Disorders NZ

Take our Voice of Rare Disorders Survey today!

The Voice of Rare Disorders survey 2023 is now open!

We encourage anyone affected by a rare disorder in New Zealand to complete our survey so that we can build a comprehensive picture of what it means to live with a rare disorder in New Zealand in 2023, particularly the challenges and barriers people continue to face within the health and social systems to access the care and support they need.

This data is so important to inform and educate stakeholders, policy makers and the general public, and to advocate for a health system that delivers for the rare disorder community.

We encourage anyone living with a rare disorder in New Zealand, as well their whānau and carers to participate.

Please help us reach as many people with a rare disorder in New Zealand as possible by encouraging those in your network with a rare disorder to participate, and by sharing about the survey widely. We have some resources on our website to make this easy to do.

The more responses we get, the stronger our voice becomes.

To take the survey click here

Thank you!

Rare Disorders NZ supports the My Life Matters campaign

Rare Disorders NZ was one of several patient advocate organisations supporting the My Life Matters campaign leading up to the general election, calling for the New Zealand Government to tackle the issue of investment and timely access to new and breakthrough medicines for the people of New Zealand. Read more about the campaign here

Rare Disorder Strategy Update - engagement with stakeholders

Ensuring that the voice of those with lived experience informs New Zealand's first Rare Disorders Strategy has been a cornerstone of the development of the strategy.

Rare Disorders NZ has consistently emphasised this requirement throughout the process to ensure the strategy is fit for purpose.

As a result, engagement with stakeholders has been occurring on a number of levels. To find out more read here.

Rare disorders omission from cabinet paper concerning

Rare Disorders NZ is alarmed that despite Manatū Hauora working for the past year on New Zealand’s first Rare Disorders Strategy to address the inequitable health outcomes for those affected by rare disorders, the rare disorder community has not once been mentioned as a priority population group in a recently released cabinet paper on the Minister of Health’s vision for primary and community healthcare in Aotearoa.

You can read our response here

Rare Disorders NZ calling for the removal of the Chair of Pharmac

Rare Disorders New Zealand is calling for the removal of Steve Maharey as Pharmac’s Chair after he has failed to take strong action against the CEO of Pharmac, Sarah Fitt, for the unacceptable language revealed in internal correspondence between Pharmac executives regarding journalist Rachel Smalley. We have written to both the current Minister of Health, Ayesha Verrall and the health spokesperson for the incoming Government, Dr Shane Reti.

Read our statement here

RDNZ and Whānau Āwhina Plunket collaborate on rare disorder training video

Rare Disorders NZ and Whānau Āwhina Plunket recently teamed up to design a course for Plunket nurses called Supporting whānau who experience rare disorders in Aotearoa. The course aims to upskill Whānau Āwhina staff in the early identification, referral and support of affected whānau with rare disorders.

It is hoped that this initiative will improve early identification of rare disorders in children, and ensure that children and their whānau receive the right support on their journey of managing their disorder.

Read more here

Improving access to Work and Income support for people living with a rare disorder

We were really pleased to present at a professional development session with the Ministry of Social Development’s Regional Health and Disability Advisors in September, letting them know about Rare Disorders NZ and some of the challenges and barriers people living with rare disorders face when accessing support from Work and Income.

Our next steps will be working with the Health and Disability advisors to create a Q and A webinar resource outlining what’s available from Work and Income for people living with rare disorders, and how to access it.

Please share what you would like us to cover by filling in our Google form here or emailing us at enquiries@raredisorders.org.nz.

We are really pleased to be working towards improving the experience people living with rare disorders have with Work and Income.

RDNZ submission on draft statement on disclosure of harm following an adverse event

The Medical Council of New Zealand has been updating its statement on disclosure of harm following an adverse event and has sought feedback on its draft statement.

Rare Disorders NZ made a submission calling for misdiagnosis and delayed diagnosis to be recognised as causing harm.

Read our full submission here

Therapeutic Products Act

We have received a letter from Minister Ayesha Verrall, including assurances about the Therapeutic Products Act and unauthorised medicine access:

I can confirm my intention that the Therapeutic Products Act (2023) (the Act) will continue to enable access to unauthorised medicines, including via pharmaceutical companies' compassionate access arrangements. As part of the work to implement the Act, Manatū Hauora officials will also explore regulatory options to ensure pharmaceutical companies continue to bring their new products to the New Zealand market. My expectation is that Manatū Hauora officials will engage with you directly on these issues.

You can read the Minister’s letter and our submission on Therapeutic Products Act here

Gearing up to Glow Up and Show Up for Rare Disorders Month 2024

After the success of our inaugural Rare Disorders Month Glow Up and Show Up for Rare campaign in March, we’re excited to be working on plans for our next Rare Disorders Month in 2024.

What makes next year extra special is that it is a leap year, meaning Rare Disease Day – the last day of February, will be celebrated on the very rarest of days, 29^th February.

We loved to see the rare disorder community all over the motu once again get behind the campaign and find ways to mobilise their communities to Glow Up and Show Up for Rare! Now is a great time to contact local schools and ask them to pencil in the 29^th February in their 2024 school calendar as a day for their students to glow up and show up for rare!

You can find resources to help you with contacting your local school here

Together we can bring rare disorders out of the darkness and into the light!

Rare Disorders in the Media